Mother ad­vo­cates for Cran­io­fa­cial Aware­ness Month

The Drumheller Mail - - NEWS - Kyle Smylie The Drumheller Mail

the plates of the skull fuse to­gether pre­ma­turely, caus­ing a mis­shapen head and re­strict­ing ar­eas in­side the skull where the brain can grow and de­velop. If left un­treated it can cause de­vel­op­men­tal prob­lems with the brain, lead­ing to vi­sion prob­lems, mi­graines, and even im­pair­ment, and an al­tered phys­i­cal ap­pear­ance for life.

Luck­ily, doc­tors were alerted when Jonathan was only two months old, al­low­ing sur­geons to per­form a less in­va­sive surgery than what would be re­quired had Jonathan been four months or older. Twenty days later Schultz took Jonathan to the Stollery Chil­dren’s Hospi­tal in Ed­mon­ton, where she used to work, to have the surgery per­formed. It in­volved doc­tors re­mov­ing a thin piece of skull with dis­crete in­ci­sions.

“It was amaz­ing to see how dif­fer­ent he looked right af­ter surgery,” she said. “If this wasn’t caught in a timely fash­ion we would have had to wait un­til he was six months old, and then there’s the wait­ing and wor­ry­ing, and longer in the OR and in re­cov­ery.” Just last week Jonathan be- gan hel­met ther­apy, which will have him in a spe­cial hel­met for four months to help re­shape his skull. He is de­vel­op­ing nor­mally, with one of the best smiles, and most kids with cran­iosyn­os­to­sis end up de­vel­op­ing ab­so­lutely nor­mal.

“He’s do­ing awe­some, ac­tu­ally… It was such a bless­ing. I’m very, very thank­ful to that woman,” Schultz said.

Septem­ber is Cran­io­fa­cial Aware­ness Month, and Schultz wanted to raise aware­ness of the rare dis­or­der that af­fected her son, which was missed by all Jonathan’s physi­cians and nurses, but was for­tu­nately fixed by the in­ter­ven­tion of a stranger on the in­ter­net.

“Some of the key signs to look for are if the fontanelles (soft spots of a baby’s skull) are closed or if there’s a bony ridge like my son had. As they grow more, they start to have a mis­shapen head be­cause if any one of the su­tures are closed, the brain only has cer­tain spa­ces to grow,” she said. Jonathan is wear­ing his hel

met for 23 hours a day and is do­ing fine, and doc­tors ex­pect a full re­cov­ery.

When Sarah Schultz gave birth to her third son Jonathan in April at the Drumheller Health Cen­tre, she thought she had given birth to an­other healthy boy.

But when she took Jonathan home to her fam­ily’s farm near Stan­dard, she no­ticed the baby’s soft spot was closed and a bony ridge had de­vel­oped on the back of the boy’s head. Schultz, a nurse her­self, asked her physi­cian and the nurses at­tend­ing Jonathan about the ab­nor­mal­ity but ev­ery­one said it was ok.

“As a nurse and a mom I knew some­thing was wrong with his head.” Jonathan’s fore­head started push­ing out and he had a very nar­row and long head shape.

It wasn’t un­til two months later when Schultz was post­ing pho­tos of Jonathan on her blog page that a reader con­tacted Schultz af­ter she no­ticed some­thing in the pho­tos. “She said she wasn’t sure if she should reach out to me, but said she no­ticed pic­tures of Jonathan and he has a very dis­tinc­tive head shape and her daugh­ter was born like that, too,” Schultz said. “When she emailed me what she thought he had, it was within 10 sec­onds on Google that I thought ‘oh my good­ness, that’s ab­so­lutely what our son has.’”

The doc­tor con­firmed what the reader had no­ticed – Jonathan had cran­iosyn­os­to­sis, a con­di­tion ap­pear­ing in 1 of 2,000 new­borns, where

Jonathan Schultz is re­cov­er­ing from surgery af­ter a stranger on the in­ter­net alerted his fam­ily to a rare brain con­di­tion af­ter see­ing pho­tos on­line. sub­mit­ted

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